jenwclark

I have trouble coming up with words or I forget what I'm saying when I'm tired. And I mean sometimes twice in the same sentence I have to stop and struggle. I also have trouble keeping little things in my mind even for short stretches. Like, when I'm cooking, remembering a measurement long enough to get from the recipe book to the mixing bowl. I'm curious how many people have gone back to school after getting sick. I dropped out of college for 2 years early on, and when I went back I was terrified that I just wouldn't be able to do it any more. Thank goodness my first class was a good one. In 2004, though, my brain fog got much worse. I don't know if I could do the work at this point, but it just got to be such agony I felt like I couldn't face it anymore. Best of luck to all you aspiring students. Spike

I'm so sorry about your experience with the MRIs. I'll keep you all in my thoughts this afternoon. Spike

When I wear knee highs with a sundress, I think of it as "POTS chic". Besides, they hide the fact that my legs are unshaven due to Midodrine-induced goosebumps. ;-)

lthomas521, Thank you so much for that information. It's really frustrating to go through all these treatments without understanding what they're doing. And since my health does not permit me to attend medical school, I'm grateful for these little snippets. Spike

Boy, does that sound familiar. I went all the way through college and a year of grad school like that, but I was only taking one or two classes at a time. The most useful strategy I learned was developing the self discipline to STOP studying when I needed to. I could spend an hour and a half straight on a problem set without getting much of anything done for the last 45 minutes. My last quarter in school, I was doing half an hour at a time, or even 15 minutes, but during those short stretches I was very coherent and efficient. I know that's harder to do with a full time course load. The other thing I had to learn was to ask for help sooner, instead of banging my head against a problem for a few hours first. Have you tried putting your feet up while you're in class? I know I get low blood pressure symptoms when I sit with my feet on the floor. Good luck! Spike

I have taken Florinef with no ill effects. My understanding is that it requires periodic blood work, but not everybody has side effects. I'm sorry to hear about your GP. I hope you can find someone more supportive. When I was a teenager, a lot of doctors told my mother she was over-protective and just needed to let me grow up. Thank goodness she didn't listen. Spike

Holy ****! That's a migraine?!!! I get things where a page of text looks like it was cut into confetti, or I see stars across part of my vision for an hour or so. Last time, I also lost some serious muscle control in my arms. After the fact, I usually think it was just anxiety or imagination ... Witness the result of being diagnosed with a psychiatric condition 15 years before being dx with POTS ... Thanks!

Isn't it great to have a whole community of people who understand that? :-) I hope the pacemaker helps and your recovery is smooth. Spike

I thought I had been symptomatic for 20 years, but it turns out my mother knew there was something wrong as early as kindergarten, which would be 26 years. I don't actually faint, I'm just tired all the time and see stars at the drop of a hat, and since neither of those is visible from the outside, it took me a while to figure out it wasn't normal.

My mother has actually suggested that I wear my compression stockings while washing my hair. Maybe if I get desperate enough ... When I first got my stockings, I only wore them when I was going to be doing something standing up (shopping, dishes, etc.), but now I wear them all the time. Initially, my ankles would start to get raw after a few hours, but I found that lotion stopped that from happening.

I've been prone to headaches all my life, but I was told many years ago that they are not migraines because migraines are on one side of the head. I'm now curious whether that's true, given the wide variety of migraine symptoms I'm reading about here. My headaches also do not respond to OTC pain meds, and I haven't tried anything stronger. For at least 5 years, and possibly all my life, I've had a constant low grade headache, but frankly I'm so used to ignoring it I usually haven't mentioned it to doctors. I'm changing that now ;-) Spike

I'm on livejournal, too. Same user ID I've got here. I don't post very often, though. I've got to check out fainters_unite!

Thanks for the ideas. It's a relief to know I'm not the only one. In the past, I've only gotten blank stares on this. One clarification -- Inderal has actually DECREASED these episodes. Or, at least, they have decreased since I've been on Inderal, whether or not there's a connection. I haven't taken this to a cardiologist yet, so that's probably the next step.

One more suggestion -- do you have a portable tape recorder you can take with you? Saves you from having to remember everything the doc says.

I have found therapy very helpful. I haven't tried CBT, but I did 7 years of talk therapy in my teens and early 20s, and it gave me some very useful skills for dealing with my life. I, too, have a strong family history of depression from both sides. There have been a good many years since then when I was unwilling to acknowledge, even to myself, that I had gottern ANY benefit from therapy, because I thought that supported the theory that my problems were all psychological. I eventually learned not to mention my depression diagnosis to new doctors, because a lot of them saw that as the source of my problems and looked no further. Where I ran into trouble was I spent many years expecting my work in therapy to fix my physical problems. Because I was still sick, I assumed I was doing something wrong or I wasn't trying hard enough. (A belief that was reinforced by some ... less than satisfactory therapists.) I think that's where the realistic expectations become important. Therapy of any sort is not going to cure dysautonomia, but that doesn't change the fact that every source of strain or stress you can remove is to the good. Looking back through these posts, I think we're actually all pretty much on the same page in this thread. Just my 2 cents. Spike

I have this weird symptom that none of my doctors have been able to explain, and I'd love to know if anybody else has had it or even heard of it. I feel like I black out for just a fraction of a second. If I'm walking, I don't fall down, and if I'm talking, I stop for a moment, but it's so quick nobody notices. It's like my brain blinks. Sometimes I hear a momentary rushing sound before it happens, and sometimes I have a series of about half a dozen in 3 or 4 second, with the rushing sound going on and off in my ears. I always feel a little bit sick afterwards. The only theory anyone has had is petit mal seizures. I did have an abnormal EEG last year, but the abnormality indicated a completely different type of seizure. My rather puzzled neurologist put me on seizure meds for a few months to see if that helped, but it made no difference. Interestingly, I did start having less of them around the time I started Inderal. Any thoughts would be welcome. Spike

From the sublime to the ridiculous. Here's what my brain produced overnight: Pitted against Puzzling Predicament Officious Onlookers Offering Outdated Opinions Tenaciously we Try Treatments Sadly Still Sick, but not Surrendering!

Heard and witnessed, guilt free. I'm new here, and this thread is part of what convinced me I wanted to be part of this community. I am so impressed by you and by the feedback you got here. Thank you for sharing your struggles, and for temporarily setting aside your Oscar-worthy happy face. Spike

I was diagnosed with depression at age 14 and accepted the diagnosis without question for several years. Of all the many antidepressants they gave me, the ones that helped the most were the SSRIs. Now I know that they were probably helping the POTS symptoms. Reading your post, I kept thinking about my mother. I was 19 when my symptoms became disabling, and I was too out of it to do much for myself medically. Depression was still the presumed diagnosis, and I was inclined to believe the doctors who said I just needed to try harder. It was my mother who figured out that I was sick, and she took me to doctor after doctor until I got back on my feet enough to take care of myself. Supportive parents make a world of difference to a sick teenager. It looks like you've got some good suggestions to go on. Good luck, and trust your judgement. Spike

I'm more likely to sweat from anxiety or excitement than from exercise. A couple of years ago, I could do 25 minutes of aerobics without breaking a sweat, but a stressful conversation or a bad dream would leave me dripping. I have felt that there was something abnormal about that, but I can't say I've explored it at all. I also have dry eyes. Not to the point that I can't cry tears, but there are weeks when I have to use artificial tears several times a day. I don't really have any useful information, I guess, but it is an interesting question.

Wonderful story! So, did being around him make you throw up? I've been wondering about this. With the first guy I really fell head-over-heels for in high school, things didn't work out, because I kept throwing up when we kissed. Is that a POTS thing? It would be so cool to think I wasn't just being completely neurotic. Spike

... the salt shaker is only for guests, you keep the whole box on the table for yourself.

Nope. No movie tie in. I'm not sure if I've even seen Land Before Time, but if there's a Spike in it, I'll have to add it to my movie list.

I'm in Columbus, but I grew up in Virginia, and I got sick before I moved out here. I think there's something to the theory that Ohio doctors are better informed about POTS. I've been telling doctors for years that I saw stars on a daily basis, and until the last couple of years, nobody ever tried to figure out why. I have an appointment with Dr. Grubb in January. I'm trying to learn as much as I can beforehand, so I can really make use of his expertise. My neurologist in town knew enough to diagnose me and give me the basic drugs, but he's been quite frank that he doesn't know much more than that.

Thanks for all the welcome messages. When I was 14, my brother-in-law thought I was too sweet and harmless for my own good, so he started calling me "Spike" in hopes that I would grow into the name. I did, in my own way. I've kept the nickname, because it does describe one side of my personality, but the "quiet" still describes what most people see.